Carlene Wilson

University of Melbourne | MSD

Objective Cancer presents a significant health challenge, particularly within culturally and linguistically diverse (CALD) populations. Religious, spiritual, and personal beliefs regarding illness may mitigate its psychological and physical impacts, varying with CALD status. This study aims to assess illness perceptions in Australian cancer patient...

Purpose Informal caregivers play a pivotal role in providing support to cancer survivors, yet have reported challenges with communicating with health providers to get all the information they need to provide optimal care. We aimed to adapt and pilot test a brief communication skills training program (COMFORT) to improve caregiver-provider communica...

Background Colorectal cancer screening reduces colorectal cancer morbidity and mortality. Identifying the factors associated with screening participation is needed to overcome barriers to screening. While several of those factors have been identified, the impact of mental and physical health on screening behaviour is not well understood. Methods T...

Objective This qualitative descriptive study draws on data collected from a sub‐sample of 15 women participating in a national study ( n = 60) exploring the breast cancer screening motivations and behaviours of women aged ≥75 years. The study aimed to understand why women living in rural and remote areas might continue accessing mobile breast cance...

Purpose Cancer caregivers from culturally and linguistically diverse (CALD) communities have reported significant unmet emotional support needs. This study aimed explore the role of social support to manage emotional wellbeing among cancer caregivers from Arabic and Chinese communities in Australia. Methods Semi-structured interviews were conducte...

Background This scoping review aimed to identify and present the evidence describing key motivations for breast cancer screening among women aged ≥ 75 years. Few of the internationally available guidelines recommend continued biennial screening for this age group. Some suggest ongoing screening is unnecessary or should be determined on individual h...

Purpose There has been little dedicated research on cancer-related cognitive impairment in patients with aggressive lymphoma. We describe and compare patients’ cognitive function with that of healthy controls and patients’ wellbeing and distress with general population values. We also explore associations between patients’ neuropsychological test p...

Objectives Although some research suggests that caregivers from culturally and linguistically diverse (CALD) communities have higher unmet information needs compared to their English-speaking counterparts, few studies have examined determinants of information needs among CALD cancer caregivers and their satisfaction with received information. This...

Background and Aim Colorectal cancer (CRC) screening programs are most effective at reducing disease incidence and mortality through sustained screening participation. A novel blood test modality is being explored for CRC screening, but it is unclear whether it will provide sustained screening participation. This study aimed to investigate whether...

Aim The aim of the systematic review was to identify conceptual models and interventions designed to improve health literacy in caregivers of adults with a chronic disease/disability. Methods MEDLINE, CINAHL, PsycINFO and Embase were searched for relevant literature. Articles were included if they focused on adults who provided informal care to so...

Objective: To achieve wellness in cancer survivorship, researchers and clinicians need a better understanding of what it means to live "well", from the perspective of cancer survivors themselves. Methods: Australian and UK cancer survivors (N = 376) diagnosed in the previous five years, were asked "What does it mean to be well?", with an open-en...

Objective In Australia, breast screening is offered free every two years to women aged 50–74 years. Women aged ≥ 75 are eligible to receive a free mammogram but do not receive an invitation. This study aimed to explore the motivations and behaviours of women living in Australia aged ≥75 years regarding ongoing breast cancer screening given the publ...

Objective To validate the 10-item Consumer Health Activation Index (CHAI), developed in the United States, as an activation measure for interventions targeted at the Australian older general population. Methods The study was a cross sectional design. Exploratory factor analysis (EFA) was conducted on survey data from a community sample of particip...

Issue Addressed Farmers experience skin cancer and die from melanoma at significantly higher rates than the general Australian population. This study examined Australian farmers' engagement with self‐skin examinations (SSE), participation in clinical skin examinations (CSE) by a health professional, and self‐reported barriers to engagement with the...

Purpose There is increasing demand for colorectal cancer (CRC) surveillance, but healthcare capacity is limited. The burden on colonoscopy resources could be reduced by personalizing surveillance frequency using the fecal immunochemical test (FIT). This study will determine the safety, cost-effectiveness, and patient acceptance of using FIT to exte...

Background: Caregivers play an important role supporting people diagnosed with cancer, yet report significant unmet information and support needs that impact on their psychological wellbeing. Health literacy and social connectedness are key factors that influence wellbeing, yet few studies have examined their relative role in psychological wellbei...

Background People from ethnic minorities are often exposed to unsafe care contributing to poorer health care outcomes. Medication safety is a high-risk area requiring intervention to improve care outcomes. Using an adapted, experience-based co-design process with cancer service staff and patients from ethnic minorities, a medication communication t...

BACKGROUND People from ethnic minorities are often exposed to unsafe care contributing to poorer health care outcomes. Medication safety is a high-risk area requiring intervention to improve care outcomes. Using an adapted, experience-based co-design process with cancer service staff and patients from ethnic minorities, a medication communication t...

Purpose Cancer-related cognitive impairment is an adverse consequence of cancer and its treatment. There has been little research with patients with aggressive lymphoma. We describe self-reported cognitive function and neuropsychological performance data in patients with lymphoma and compare them with healthy controls and population norms. Associat...

Objective: To evaluate the psychometric properties of the Perceptions of Parental Illness Questionnaire for Cancer (PPIQ-C) among adolescents and young adults (AYAs). Methods: A sample of 372 AYAs (aged 12-24 years) who had a parent diagnosed with cancer completed the PPIQ-C and the Kessler Psychological Distress Scale (K10). Exploratory factor...

Disparities in cancer incidence and mortality exist between settled and newly-arrived immigrant communities in immigrant-nations, such as Australia, Canada and USA. This may be due to differences in the uptake of cancer prevention behaviours and services for early detection, and cultural, language or literacy barriers impacting understanding of mai...

Background: Smoking and resulting health problems disproportionately impact low socioeconomic status (SES) individuals. Building resilience presents an approach to 'closing the gap'. Mindfulness-based interventions and setting realistic goals are preferred in low socioeconomic communities. We aim to test if these interventions, delivered online an...

Objectives Caregivers play a key role in providing support to people with cancer. However, caregiving can be stressful and demanding, resulting in perceived caregiver burden. Social connectedness is considered partially independent from social support, yet few studies have examined whether social connectedness impacts caregiver burden. The current...

Background: Participation is low (43%) in Australia’s National Bowel Cancer Screening Program which provides a biennial Fecal Immunochemical Test kit mailed to the home of Australians aged 50-74 years. While several factors for non-participation have been identified, the role of mental and physical health on screening behaviour has not been assesse...

Background: Urgent action is required to identify socially acceptable alcohol reduction options for heavy-drinking midlife Australian women. This study represents innovation in public health research to explore how current trends in popular wellness culture toward 'sober curiosity' (i.e., an interest in what reducing alcohol consumption would or c...

Introduction Although it is widely accepted that the physical environment can impact health quality and care outcomes, its impact on consumer engagement with health services has not been examined. Currently, no tools exist that assess the opportunities for consumer engagement offered within the physical environment. We aimed to develop and validate...

This Evidence Check sought to find effective interventions for tobacco screening and cessation in CALD communities. It focused on Chinese, Vietnamese and Arabic speakers, as they are the largest CALD populations in Australia and have high rates of smoking and low rates of screening adherence. A total of 68 studies dating from 2013 were included; ho...

Background High rates of alcohol consumption by midlife women, despite the documented risks associated with breast cancer, varies according to social class. However, we know little about how to develop equitable messaging regarding breast cancer prevention that takes into consideration class differences in the receipt and use of such information....

Purpose Cancer-related cognitive impairment (CRCI) is a recognised adverse consequence of cancer and its treatment. This study assessed the feasibility of collecting longitudinal data on cognition in patients with newly diagnosed, aggressive lymphoma undergoing standard therapy with curative intent via self-report, neuropsychological assessment, pe...

Objective: This is to determine whether health beliefs regarding colorectal cancer (CRC) screening could predict discomfort with a change to CRC surveillance proposing regular faecal immunochemical tests (FIT) instead of colonoscopy. Methods: Eight hundred individuals enrolled in a South Australian colonoscopy surveillance programme were invited...

Alcohol consumption by Australian women during midlife has been increasing. Health promotion efforts to reduce alcohol consumption in order to reduce alcohol-related disease risk compete with the social contexts and value of alcohol in women’s lives. This paper draws on 50 qualitative interviews with midlife women (45–64 years of age) from differen...

Introduction: COVID-19 has impacted lives worldwide. Public health guidance has advocated for minimisation of infection risk by encouraging social isolation and physical distancing. In response, many health services have changed delivery practices to increased use of telehealth. We undertook an audit of hospital attendance data collected from a ra...

This study examined Australian farmers’ engagement with skin cancer prevention behaviours and explored what made it hard for them to be ‘SunSmart’ (barriers), and what could be done to make prevention easier (facilitators). In total, 498 farmers (83.1% male, 22–89 years, 50.8% grain, sheep, or cattle farmers) participated. The least frequently perf...

Objective Targeted behavioural interventions are needed to address psychosocial factors leading to slower help-seeking for cancer symptoms among men. This study compared the variance in men’s help-seeking intentions explained by the Theory of Planned Behaviour and Health Belief Model. Method A cross-sectional survey of 127 men was conducted, testi...

Purpose To explore the experiences of people caring for someone with cancer, while living in rural Australia, and the impact of the cancer-caring role on their well-being. Method Eighteen adults in regional or remote (‘rural’) Australia who cared for a person with cancer took part in semi-structured telephone interviews. Participants were aged 32–...

Purpose Cancer-related cognitive impairment (CRCI) is a recognised adverse consequence of cancer and its treatment. This qualitative sub-study was undertaken as part of a larger prospective longitudinal study in which recruitment and retention were very high. The aim was to gain an understanding of participants reasons for ongoing participation, at...

In this article, we explore how women in different social classes had differential access to resources and services to enhance their ‘wellness’—resulting in classed roles in alcohol consumption. We analyse data from a qualitative study on alcohol by midlife women in South Australia and employ the analogy of a ‘toolkit’ in order to understand the st...

This article explores adaptive capacity as a framework for understanding how South Australian women in midlife (aged 45–64) demonstrated resilience during the early phases of COVID-19. In-depth interviews were undertaken with 40 women mid-2020 as a follow-up study to interviews with the same women undertaken 2018–19 (before COVID-19 emerged). Trans...

The present study: (a) examined the extent of caregiver burden and psychological wellbeing and (b) tested whether social connectedness moderated the association between caregiver burden and psychological symptoms in caregivers of people with cancer. The cross-sectional survey study included 189 cancer caregivers (mean age = 36.19 years, standard de...

Purpose Cancer-related cognitive impairment (CRCI) is a recognised adverse consequence of cancer and its treatment. This study assessed the feasibility of collecting longitudinal data on cognition in patients with newly diagnosed, aggressive lymphoma undergoing standard therapy with curative intent via self-report, neuropsychological assessment, pe...

Aims This study aimed to examine perceived social norms, the effect of parental drinking on these norms, alcohol use in front of children, and how norms and consumption vary based on child age and gender of the parent. Methods A cross-sectional online panel survey was undertaken with n = 1000 Australian adults (including 670 parents) aged 18–59 ye...

Objectives This study examined whether exercise beliefs and illness perceptions were associated with changes in exercise behaviour following a cancer diagnosis. Design This study uses a cross-sectional survey of 366 adults with a diagnosis of cancer, who were currently receiving treatment. Main outcome measures The main outcome measures are sympt...

Introduction Consumer engagement is central to high-quality cancer service delivery and is a recognised strategy to minimise healthcare-associated harm. Strategies developed to enhance consumer engagement specifically in relation to preventing healthcare harm include questioning health professionals, raising concerns about possible mistakes or risk...

Background Engagement frameworks provide the conceptual structure for consumer engagement in healthcare decision making, but the level to which these frameworks support culturally and linguistically diverse (CALD) consumer engagement is not known. Objective This study aimed to investigate how consumer engagement is conceptualised and operationaliz...

Background: Little research examines the extent and impact of aggressive or uncomfortable 'confronting behaviour' experienced by palliative care nurses, despite palliative wards being an emotionally labile environment. Methods: Qualitative data on nurses' experiences of confrontation were collected from 17 palliative care nurses at a major metro...

Introduction: This project examined the impact of COVID-19 and associated restrictions on alcohol practises (consumption and stockpiling), and perceptions of health risk among women in midlife (those aged 45–64 years). Methods: We collected online survey data from 2,437 midlife women in the United Kingdom (UK) and Australia in May 2020, recruited u...

Introduction: Before the pandemic, mid-life women in Australia were among the “heaviest” female alcohol consumers, giving rise to myriad preventable health risks. This paper uses an innovative model of social class within a sample of Australian women to describe changes in affective states and alcohol consumption patterns across two time points dur...

Objective To identify variables that correlate with sexual satisfaction and sexual distress among adult cancer survivors, and how these differ, providing a basis from which approaches to intervention may be identified. This study examined four key variables: body image disruption, self-compassion, relationship satisfaction and sexual pain previousl...

Few studies have directly targeted nonparticipants in colorectal cancer screening to identify effective engagement strategies. We undertook a randomized controlled trial that targeted nonparticipants in a previous trial of average-risk subjects which compared participation rates for mailed invitations offering a fecal test, a blood test or a choice...

Objective Previous research has described the low uptake of psychosocial support services in people living with cancer. While characteristics of individuals using services have been examined, mechanisms applied to link individuals to support services are less frequently considered. This review aims to identify the mechanisms used to link people wit...

Purpose Cancer-related cognitive impairment (CRCI) is a recognised adverse consequence of cancer and its treatment. This qualitative sub-study was undertaken as part of a larger prospective longitudinal study in which recruitment and retention were very high. The aim was to gain an understanding of participants reasons for ongoing participation, at...

Despite evidence that survivorship support programmes enhance physical and psychosocial wellbeing, cancer patients and survivors often do not use these supportive care services. This study investigated the utility of the Common Sense Model of Self-Regulation for predicting supportive care use following cancer, and the mediating role of coping strat...

Australian women's alcohol consumption has increased in frequency during COVID-19. Research suggests this is to cope with stress resulting from the pandemic and COVID-19 countermeasures that require social distancing. This is a critical public health concern because increased alcohol consumption, even for a short period, increases the myriad longer...

Objective To investigate what factors need consideration for telehealth services for cancer supportive care, given the rapid transition to telehealth as a result of COVID-19. Methods A scoping review and a review of current guidance and guidelines provided by professional bodies, representing relevant discipline groups for cancer supportive care,...

Introduction The COVID‐19 pandemic demanded a rapid response within Radiation Oncology services to minimise the risk of infection to patients and workforce. This study aimed to assess whether the operational changes put in place to reduce infection risks were effective in engaging and supporting staff. Methods Our service’s response saw staff and...

The transition from urban centres back to rural and remote communities can be challenging for rural cancer survivors after treatment. This study aimed to (a) provide deeper understanding of the experiences of rural survivors who have completed active cancer treatment and returned to their rural communities, and (b) determine strategies to re-orient...

Purpose This study examined the impact of task-based and relationship-based social support received in the workplace on cancer survivors’ retrospective satisfaction with their return to work experience. Methods Cancer survivors (N = 159), completed an online questionnaire assessing their satisfaction with the return to work experience, overall job...

Objective The objective of this exploratory study was to determine the presence and correlates of self‐reported cognition in a sample of haematological cancer patients who had undergone allogeneic stem cell transplantation (SCT). Methods Haematological cancer patients (n = 30) who had undergone allogeneic SCT between one and five years previously...

Objective Rural men affected by cancer are difficult to engage in psychosocial support services. This exploratory study tested whether exposure to printed brochures describing services, distinguished by a focus on rural men affected by cancer, resulted in more positive help‐seeking attitudes than exposure to material focused on rural location only...

Introduction: Cancer-related cognitive impairment (CRCI) is a distressing and disabling side-effect of cancer treatments affecting up to 75% of patients. For some patients, their cognitive impairment may be transient, but for a subgroup, these symptoms can be long-standing and have a major impact on the quality of life. This paper describes the pr...

This study reports preliminary data about the information needs of esophago-gastric cancer survivors and their supporters across diagnosis and treatment by identifying time-specific needs and whether the information provided aligned with the needs at each time point. Survivors (n = 26) and supporters (n = 15) were recruited from a public teaching h...

Background: Social vulnerability refers to the ways in which an individual is at risk of being victimised. The Test of Interpersonal Competences and Personal Vulnerability [TICPV] is an Australian assessment tool designed for adults with intellectual disabilities (ID) [Wilson et al. (1996). Vulnerability to criminal exploitation: Influence of inter...

Objective To examine whether routine assessment of distress, recommended as part of comprehensive cancer care, is utilised equally with culturally and linguistically diverse (CALD) versus non‐CALD people living with cancer. Methods A medical records review of all patients attending cancer‐specific treatment units at a single tertiary hospital in M...

Melanoma is the most common cancer among young Australians. Despite school-based programs such as 'Sun Smart' leading to increased knowledge among children of the harmful effects of sun exposure, many young adults continue to desire a darker skin tone because of a general perception among their peers that tanned skin is attractive. This 'tanned-ide...

Comprehensive cancer services aim to provide support in all domains of care that impact distress: physical, emotional, family, practical and spiritual. The extent of provision, referral and utilisation of these services varies dramatically, suggesting a need to improve understanding of the importance of these services. The aim of this study was to...

A systematic scoping review of anti-smoking mass media campaign literature provided opportunity to explore how social normative theories and constructs are used to influence smoking cessation. Synthesis of findings was constrained by significant heterogeneity. Nevertheless, the results indicate that a broader conceptualization of social norm is wor...

Purpose People affected by cancer who live in rural Australia experience inferior survival compared to their urban counterparts. This study determines whether self-reported physical and mental health, as well as health-promoting behaviours, also differ between rural and urban Australian adults with a history of cancer. Methods Weighted, representa...

Media literacy interventions provide education about the way media influence attitudes to tanned skin and promote risky health-related behaviors (e.g., sun exposure). This study tested whether higher levels of media literacy can protect against the internalization of a tanned ideal and participation in appearance comparisons online. A total of 151...

Although illness perceptions have significant implications for psychological morbidity in those diagnosed with a physical illness, the strength of this relationship in their family members remains understudied. The validity of findings is dependent on the quality of the instruments used; therefore, it is essential that psychometrically robust measu...

Introduction: Improving diet is a prime target for the prevention and management of chronic disease. The communal coping model suggests that families can mitigate shared risk of chronic disease through encouragement of healthful eating, eliciting preventive behaviors. Method: Using network data from 69 Australian families across three ancestry g...

Background: Smoking prevalence remains inequitably high for lower SES (socioeconomic status) populations. The psychosocial interactive model of resilience theorises that resilience might be 'switched on' in order to support and/or maintain smoking cessation for these populations. This study aimed to develop a Resilience Intervention for Smoking Ce...

Despite improved mortality rates, cognitive and academic difficulties are evident in some childhood cancer survivor groups. This meta-analysis aims to determine whether: 1) survivors have lower educational attainment than non-cancer controls; 2) educational attainment varies according to cancer type (CNS versus non-CNS); and 3) whether an early age...

Suboptimal participation is commonly observed in colorectal cancer screening programs utilizing fecal tests. This randomized controlled trial tested whether the offer of a blood test as either a "rescue" strategy for fecal test nonparticipants or an upfront choice, could improve participation. A total of 1,800 people (50–74 years) were randomized t...

Background: Emerging adulthood presents unique challenges to smoking cessation that are not well understood. During this phase, smoking identities can develop that become obstacles for quitting, particularly in social situations where smoking is accepted and expected. Using a social identity approach, this study explores how social relationships an...

Background Individuals construct beliefs about an illness based on their own perceptions, interpretation, and understanding of the illness and its treatment. These beliefs (collectively referred to as “illness cognitions” or “representations”) can have implications for psychological outcomes in family members and carers of an individual with an ill...